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The Importance of Assisting Families Experiencing Babies with Congenital Heart Disease

Written by: Jody Adams
Last updated: March 25, 2024

Finding out that your baby has a congenital heart disease can be life-altering and devastating. You cannot imagine your life going forward. Immediately your mind runs towards an image of your little one requiring painful and risky surgeries with difficult recoveries. Understanding the implications of such a frightening diagnosis can be achieved through the aid received from a children's congenital heart disease non-profit.  Here are some of the ways you can get help with a child who has been diagnosed with a congenital heart disease.

Facts About Congenital Heart Disease

Congenital heart disease (CHD) is the most prevalent birth defect. It impacts the lives of about 8 out of 1,000 babies.

In this country alone, some 35,000 babies are diagnosed yearly with CHD and about a quarter of them present critical congenital heart defects. These require surgery and other medical interventions during their first year for them to survive. Parents feel helpless when their little one is hospitalized and feel powerless, believing that there is not much they can do to help their little ones other than staying by their side and praying.

Fortunately, there have been significant advancements in the chirurgic and management aspects of these conditions and it is expected that over 85% of these children will be able to survive to adulthood. CHD is now defined as a chronic disease and not a terminal one. Yet, despite the advances in medical treatments, these children usually require being under the care of specialized doctors throughout their lives.

Understanding the Challenges Faced by the Parents

All parents want to be there for their children, much more so at a time when the little one seems to be so vulnerable. A typical way in which these parents may notice their newborn may need more help than previously anticipated is with feeding. After having had to spend many weeks or months in the Neonatal Intensive Care Unit (NICU), with attachments or tubes coming out of their little bodies, they must now learn to eat by themselves and this may require some adjustments both on the part of the parent and the child. Additionally, some babies may come home after being fed through a feeding tube and may be having trouble gaining weight.

Another area of concern for these parents may be what is known as information overload. While sitting for hours watching their babies in the NICU and spending endless sleepless nights at home, it is common for these parents to turn all their worries towards an intensive online search. This information overload may be filled with half-truths or erroneous facts. Make sure to stick to information from reputable websites or ask your doctor to clarify any questions you might have.

Managing Care

As they grow, children with CHD tend to have weaker immune systems than their peers. This may have them going to the hospital for illnesses that other kids their age get over in a couple of days. Parents must be particularly careful to get their annual flu and COVID shots and ask those who are in regular contact with their child to do the same. They may also want to include asking everyone to get their shot to prevent whooping cough.

As they watch these children grow and thrive, parents must learn when to be extra careful and when to let go of the fear of harm coming to their children. This means that parents must learn to walk the fine line between being overly protective and allowing their young offspring to lead a life as normal as possible.

Jody Adams
Jody Adams is an accomplished editor-in-chief with a deep understanding of social care and government benefits issues. With a background in journalism and a master's degree in Public Policy, Jody has spent her career shaping the narrative around social policies and their impact on society. She has worked with renowned publications, effectively bridging the gap between complex policy analysis and public understanding. Jody's editorial expertise ensures that vital information on social care and government benefits reaches a broad audience, empowering individuals to make informed decisions.
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